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Does it truly sound like Crohn's?

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Crohn's Disease
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Posted 6/3/2012 10:50 AM (GMT 0)
I've posted here once or twice about 6 years ago, and people were very helpful, and I could use some insight.  Here's my story in a nutshell:  In 1999, I experienced lower right side abdominal pain for about 4-6 hours, no other symptoms at all, no diarrhea, no constipation, no blood, no vomiting, etc..  Went to the ER.  They thought I had appendicitis, but then the pain subsided (with no medication at all, not even pain medication).  I left the ER within a few hours and had no problems at all for 7 years. 

 In 2006, I again experienced lower right side abdominal pain for a few hours, no other symptoms again.  Went to the ER on the advice of my primary care physician for suspicion once again that I had appendicitis.  The pain again subsided (without any medication once again) and I left the ER without even being seen yet by a doctor.  Went to a gastro dr. in Manhattan that week and had a CT scan, which showed mild inflammation of my terminal ileum.  The gastro said that I had crohn's, even though I had experienced pain for only a few hours twice in 7 years and never had any other symptoms.  I went to another gastro, b/c I just couldn't believe I could have Crohn's without any symptoms other than a few hours of mild to moderate pain.  I went to a highly recommended gastro who examined me and listened to my history, reviewed the CT scan and said that I didn't have Crohn's for a few reasons, inlcuding that I did not have any symptoms, and that if I did have a flare up the previous week, it is unheard of for a Crohn's flare to stop without any medication.

Fast forward to 2012. I again experienced lower right abdominal pain for a few hours, and also experienced some bright red blood for about a week.  The pain subsided, without medication.  Went to the same gastro, who did a colonoscopy (my first).  The colonoscopy came back normal, no evidence of Crohn's, but I have a hemmorhoid.  The blood subsided right after the colonoscopy.  Did a prometheus test, that came back positive for Crohn's a few weeks ago, and now the gastro says I have it, but has prescribed no medication because I am not experiencing any symptoms.

Sorry for the long history, but what do you think? Can you have Crohn's for 13 years (I'm 43 by the way), without experiencing any symptoms at all other than a few hours of pain (mild to moderate cramping) every 6-7 years and a week worth's of bright red blood on the toilet paper?  Also, I do not experience diarrhea or constipation at all, ever (knock on wood).  If I do have it, should I go on medication right now?  Anyone else ever get out of a flare (assuming I was in a flare) without any medication at all?  Will I get worse?   I know this last question is unanswerable, just threw it in there. 

Any help would be much appreciated!!  Thanks.

 

Posted 6/3/2012 9:34 PM (GMT 0)
There have been a few people here in the couple of years that I've been posting that have stories similar to yours. I also have a friend who's two sons have Crohn's and she didn't find out that she had it until she had her first colonscopy at age 50. She'd been treated for many years for rheumatoid arthritis and continues to see a rheumatologist for that. She has not, to my knowledge, treated her bowel inflammation (which was found on the scope).

I suspect that you DO have symptoms of Crohn's even if they're not bowel symptoms. Many of us struggle with a variety of extra-intestinal problems that are connected to our bowel disease.

A clear colonscopy is a great thing, but you could have inflammation in the small bowel that is not found by this scope. You might want to do a small bowel series or swallow a pill-cam, but given that you have no complaints, why worry about it at all?
Posted 6/3/2012 9:59 PM (GMT 0)
Thanks for replying. I think a pill camera is an option. I am supposed to do another CT scan this week. I did an upper GO series in 2006 that didn't show anything. What other symptoms do you suspect I am have had? I haven't had any arthritis, mouth sores, weight loss, etc. I haven't seen a dr for anything other than regular checkups except for these visits to the gastro a few times since 1999. I really appreciate your help. I know I night be offending people by complaining in my situation but it is frustrating to hear a diagnosis that does not seem to match my symptoms or lack thereof.
Posted 6/4/2012 1:10 AM (GMT 0)
This is basically how my crohn's started. I was having the same pain episodes for every 6-8 weeks, and every time got closer and closer, up until 4 weeks I think, and they would last 10-12 hours and go away on their own. No other symptoms, just pain.

Finally the last one gave me a fever and more pain than I could tolerate, so I went to the ER, CT scan showed inflammation, Colonoscopy also showed severe inflammation and got the dx of Crohns.

Sounds like yours is just being very mild. Hopefully it continues to stay put.
Posted 6/4/2012 1:33 AM (GMT 0)
I truly wish that to be the case but I know that there are no predictions with crohn's. What happened after that visit to the ER? I am very worried that I will progress to a worse case than I have now.
Posted 7/13/2012 7:25 PM (GMT 0)
I hope I am not annoying people, but I am truly looking for some insight from people who know this disease first-hand. Since my posts above, I have had a fecal calprotectin test that came up perfectly normal and I just today had a small bowel follow through that also was normal. I saw the terminal ileum on the screen and the dr came in to show me that it shows no signs of disease at all. So, as it now stands, all that has pointed solidly in the directino of Crohn's is the Prometheus IBD Diagnostic test, which has twice shown that I have the markers for Crohn's, although no inflammation markers.

Where do I go from here? Should I take any other tests? I am not currently in any pain or suffering from any symptoms at all. Any thoughts would be very much appreciated!!
Posted 7/15/2012 2:34 AM (GMT 0)
TJ

Im kind of in the same boat. Whatever the tests show the main thing is that the inflamation is low or not there.

Crohns is a scary word. Sometimes reading stuff on a messge board can make it scarier. It's happened to me.

Posted 7/15/2012 3:28 AM (GMT 0)
All blood tests on me come back normal. My ct scan comes back showing normal inflammation. Colonoscopy def shows crohns. That's the only test that has worked for me that I've taken.
Posted 7/15/2012 9:43 AM (GMT 0)
Thanks very much for your replies. Livingwell, what tests have you had and what did they show? I'm wondering if you have had the same results as I have. I am just so confused by the Prometheus results showing that I have Crohn's, while every physical (non-blood) test I have had has come up normal, and I feel no symptoms. I mean, what do I do now? Do I go on medication, with no symptoms and no physical indication of disease, just on the strength of the blood test?

Mommyof2little1s, where is your Crohn's? My colonoscopy came back normal, but they could not get into the terminal ileum, where it is suspected I have it. The small bowel follow through showed the terminal ileum being normal, but I know that a colonoscopy gets a better view and is able to take biopsies.
Posted 7/15/2012 1:00 PM (GMT 0)
When I had my colonoscopy I had the ulcerations in the terminal ileum. They did biopsies of that area and came back crohns. And I've had stomach pains for the last 10-15 years. I would get really bad pains and they would completely go away with no medication or anything just like you said. I never we t to the hospital but I've been to many docs when I was younger and because they never found anything wrong they would tell my mom I was faking it or just trying to get attention. After that I learned how to handle the pain. I wouldn't get it all the time but I wouldn't have any problems for many many months and then out of the blue I would be doubled over in pain. I would just sit really still til it didn't hurt so bad.

After all the doctors were no help I stopped telling my mom how I was feeling because it upset her that she couldn't help me. After having my 2 boys I knew I was a mess and I guess that threw me into a flare. Then my little brother found out he had crohns and I just knew that's what I had to plus being in this flare after the kids made so much since. So I went back and eventually they did the colonoscopy.
Posted 7/15/2012 1:41 PM (GMT 0)
Thanks very much for sharing your history, it's very enlightening since it seems like we might have had somewhat similar experiences. Did you have diarrhea or constipation during those 10-15 years in addition to the intermittent pain?

I guess I need to find out if the small bowel follow through would have identified any scarring or lacerations or if it is not as detailed as that. All I was told was that the terminal ileum is totally normal from what they could see. Maybe I need a CT scan? would that show more than the small bowel series would? I know I need to ask these questions of my doctor but I cannot get an appointment with him for a month.
Posted 7/15/2012 3:56 PM (GMT 0)
My symptoms were mostly gas, some mucous and a bit of constipation. All my blood work was normal but a colonoscopy showed mild to moderate inflamation in the ilieum. I think he saw 2 small ulcers. The biopsy said "if an infection can be ruled out then an IBD may be suspected" So the doctor labeled it mild crohns. Anohter doc who did a colonoscopy 4 years prior doesn't label it as crohns. He says it's nonspecific.
To be honest I dont think it matters what the diagnosis is. The fact is I have/had some inflammation and it doesnt look to be getting worse and as long as I don't eat too much crap and try to be stress free (yeah right!) I should be ok. But like you my mind gets away from me and I get anxious about it.
Posted 7/15/2012 4:05 PM (GMT 0)
I really didn't have any of the symptoms during those years besides the pain.

When I went to my gi he said first they would do bloodwork, if that was normal then a colonoscopy, thief that was normal he would give me the little camera in a pill and have me swallow that to take pictures. He said there are many tests and one of them should show something. I never did the pill camera, the colonoscopy showed enough.
Posted 7/15/2012 6:24 PM (GMT 0)
I am in a very similar situation. Went to primary doctor for yearly check-up. I told him I was slightly constipated. Blood test came back with a possitive ASCA Igg however ASCA iga was negative and all other PANCA tests were negative. I was then told to see a gastro doctor and show him my results. I told my gastro my symptoms which were constipation and slight diarreah. No pain at all.. No blood in stool although I do get hemmoroids sometimes. No real signs of chrons disease.. He then told me I was fine and started to send me on my way.. I told him ''What about the asca test?''he said if it will make me feel better he would do a colonoscopy and test for inflamation. So I then agreed and spent $1300 on a colonoscopy which my insurance would not cover...results came back perfectly fine..However to be sure he then told me I had to do a pill camera test which takes 50,000 pictures of my small bowel. I still cant understand how someone can review 50,000 pictures without taking months..but anyway swallowed the pill and the test came back fine. The doctor told me I do not have chrons and gave me a antibiotic and said I might have a bacterial overgrowth in my digestive track. I took the pills and all my symptoms vanished. However this was 10 months ago and now the constipation is slowly coming back along with acne,, which also vanished once I took the antibiotics..I just want to know what the heck is wrong with me?.all info on internet says asca test is 95% specific for chrons but my doctor told me I am worried for nothing. what is going on??
Posted 7/16/2012 2:32 AM (GMT 0)

J123 said...
I am in a very similar situation. Went to primary doctor for yearly check-up. I told him I was slightly constipated. Blood test came back with a possitive ASCA Igg however ASCA iga was negative and all other PANCA tests were negative. I was then told to see a gastro doctor and show him my results. I told my gastro my symptoms which were constipation and slight diarreah. No pain at all.. No blood in stool although I do get hemmoroids sometimes. No real signs of chrons disease.. He then told me I was fine and started to send me on my way.. I told him ''What about the asca test?''he said if it will make me feel better he would do a colonoscopy and test for inflamation. So I then agreed and spent $1300 on a colonoscopy which my insurance would not cover...results came back perfectly fine..However to be sure he then told me I had to do a pill camera test which takes 50,000 pictures of my small bowel. I still cant understand how someone can review 50,000 pictures without taking months..but anyway swallowed the pill and the test came back fine. The doctor told me I do not have chrons and gave me a antibiotic and said I might have a bacterial overgrowth in my digestive track. I took the pills and all my symptoms vanished. However this was 10 months ago and now the constipation is slowly coming back along with acne,, which also vanished once I took the antibiotics..I just want to know what the heck is wrong with me?.all info on internet says asca test is 95% specific for chrons but my doctor told me I am worried for nothing. what is going on??

My ASCA test came back negative as well as the PANCA test but yet one of my doctors who did a colonoscopy said I had mild crohns. There's an article from Dr Ali that mentions when he was a pathologist the same colon section he was biopsying could have been diagnosed as 3 or 4 different types of colitis. I agree with this. Theres only certain things a colon can do when it's inflamed. If your colon isn't currently inflamed then whatever was irritating it is obviously not doing it at the moment no matter what blood test show.
Posted 7/16/2012 10:05 AM (GMT 0)
J123, I feel your frustration. Can the blood test alone diagnose someone for Crohn's when the physical tests are normal and little to no symptoms? My intestines are not inflamed nor do I have any ulcers. And the problem is that my dr, who is extremely experienced, cannot give me any more of a definitive answer.
Posted 11/19/2016 8:23 PM (GMT 0)
If you have high levels of ASCA but a Crohn's diagnosis is elusive, you should find a well-educated specialist to investigate the possibility of Behçet's disease (and also research Behçet's symptoms to see if you match them). "Acne" and joint pains are common manifestations, and it can be accompanied by gastrointestinal problems. There are also neurological and opthamologic findings sometimes. Higher than normal ASCA levels can indicate Behçet's, but it's ultimately a diagnosis of exclusion. Are you near any good teaching hospitals? If so, I would do some digging to see if anyone familiar with Behçet's can see you.
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